Abstract
BackgroundLarge, integrated datasets can be used to improve the identification and management of health conditions. However, big data initiatives are controversial because of risks to privacy. In 2014, NHS England launched a public awareness campaign about the care.data project, whereby data from patients’ medical records would be regularly uploaded to a central database. Details of the project sparked intense debate across a number of platforms, including social media sites such as Twitter. Twitter is increasingly being used to educate and inform patients and care providers, and as a source of data for health services research. The aim of the study was to identify and describe the range of opinions expressed about care.data on Twitter for the period during which a delay to this project was announced, and provide insight into the strengths and flaws of the project.MethodsTweets with the hashtag #caredata were collected using the NCapture tool for NVivo. Methods of qualitative data analysis were used to identify emerging themes. Tweets were coded and analysed in-depth within and across themes.ResultsThe dataset consisted of 9895 tweets, captured over 18 days during February and March 2014. Retweets (6118, 62 %) and spam (240, 2 %) were excluded. The remaining 3537 tweets were posted by 904 contributors, and coded into one or more of 50 sub-themes, which were organised into 9 key themes. These were: informed consent and the default ‘opt-in’, trust, privacy and data security, involvement of private companies, legal issues and GPs’ concerns, communication failure and confusion about care.data, delayed implementation, patient-centeredness, and potential of care.data and the ideal model of implementation.ConclusionsVarious concerns were raised about care.data that appeared to be shared by those both for and against the project. Qualitatively analysing tweets enabled us to identify a range of concerns about care.data and how these might be overcome, for example, by increasing the involvement of stakeholders and those with expert knowledge. Our findings also highlight the risks of not considering public opinion, such as the potential for patient safety failures resulting from a lack of trust in the healthcare system. However, caution is advised if using Twitter as a stand-alone data source, as contributors may lie more heavily on one side of a debate than another. A mixed-methods approach would have enabled us to complement this data with a more representative overview.
Highlights
Large, integrated datasets can be used to improve the identification and management of health conditions
Some did see the benefits of such a project, which led to the development of the theme ‘potential of care.data and the ideal model of implementation’
The legality of the project was questioned in relation to the Data Protection Act and General Practitioner (GP) had concerns about the availability of the technology required to pseudo-anonymise data before it leaves the GP practice, and the processes that would be put in place to ensure this data was securely transferred and stored
Summary
Large, integrated datasets can be used to improve the identification and management of health conditions. Big data initiatives are controversial because of risks to privacy. Twitter is increasingly being used to educate and inform patients and care providers, and as a source of data for health services research. In healthcare, integrated systems and datasets can be used to identify risk factors for health conditions, and opportunities for their prevention and management [2]. There are downsides to such large, integrated datasets, such as the risk of individual identification and loss of privacy, and the impracticality of seeking informed consent from each patient before accessing their data [4].
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
